Well, yesterday was better than the day before and honestly I woke up feeling better yesterday than I did today. Just when I think I might be accepting this I wake up with such a heavy burden on my heart that I can’t even shower without sobbing my eyes out. Is it too soon to ask when this roller coaster will come to a screeching halt? We were able to pick Aaden up from my parents last night, finally, and as soon as he woke up this morning (which I had to go wake him up because I couldn’t stand it any longer) everything felt better. He is certainly our saving grace through all of this and we missed him more than ever while he was away; it would have been so selfish for us to keep him with us while we were so torn apart by the news of his sweet baby brother. I can honestly say that I cannot thank God enough for blessing us with Aaden on January 10, 2008; even his birth 3 years ago was a strategic placement by God to prepare us for this journey. We have had time from Wednesday, January 5th to grieve nonstop and allow the involuntary tears to flow and we are now ready to turn our focus back to him; just in time for his birthday. God’s timing is an amazing thing. Today we will go to lunch with our family and then take him to the monster truck show in Houston, all in celebration of his birthday. Having the luxury of celebrating the life of our child here on earth during this time is a blessing beyond measure. God gave him to us 3 years ago to make us smile, make us cry, make us so mad we can’t see straight, to show us a love that is incomprehensible prior to having a child of your own and to help us find a reason to find joy in all things during this new path God has laid before us. Having the pleasure of celebrating his life here with us is allowing us to celebrate a happy event during this time of obvious tragedy.
Yesterday we started the day crying with Dr. Sherman in her office. Let me please say she is one of the strongest and most professional women I’ve ever encountered. We just became her patients and I can feel her love for us. Not only is she a Dr. but she’s a mother and her heart is bleeding for us and that has been made evident through her pure concern for us as people and not just patients. When we found out we were pregnant with this baby I immediately called Dr. Smith, who had been my Dr. since I was just a child and had done an amazing job delivering Aaden; his office informed me that he stopped delivering babies right after Aaden was born. I know I was an awful pregnant patient and was feeling somewhat responsible for him deciding to stop delivering babies, silly thought but was I was thinking nonetheless. I sat in my room and sobbed like any newly hormonal pregnant woman would do. I couldn’t imagine going through a pregnancy with any other Dr. and didn’t want to, so I made an appointment to see him; my plan was to beg him to just deliver my baby and then say he was done! We got there and visited with him and he expressed that he and his wife had opened a UPS store in the Woodlands, very random and has nothing to do with gynecology, but that was his reason for not being able to take on the responsibility of being on call for tons of women waiting to deliver. I had always heard wonderful things about Dr. Sherman but I also heard that she doesn’t take new patients so I was going out on a limb to have his office call her office to see if she’d take me; thank God she said she would. I cannot imagine going through this with any other Dr. She not only handled the delivery of this news with such grace and elegance that I can’t even begin to accurately describe, she also called me from her home on her day off this week just to check on me. This was Thursday, not that days have any individual meaning to us at this point; it all has run together as if it has been one long terrible day. As we spoke on the phone I told her that Aaron and I had a ton of questions for her and we wanted to know if there was a time we could come in. Her immediate response was to please come in the next day at 8:30 so she could meet with us before she started seeing patients. I think we messed up her entire schedule that day as she spent an hour with us answering all of our questions, comforting us and even at times laughing a little with us. She answered all of our questions to the best of her knowledge and the ones she couldn’t really answer she was quick to tell us not to worry with it, that she would figure it out and let us know. I can’t say enough wonderful things about her; she has impacted us in a way she’ll never completely understand.
In our meeting with her we were able to have some light shed on a few of the things we were very unclear on. When we met with Dr. Reiter he expressed that organ donation wasn’t something we should put much stock in, which left us feeling a bit down and out. We asked her what the likelihood was of a baby being out there that might benefit from our decision and she lit up and said there are babies born all the time needing vital organs to live. She did express that she didn’t want us to put all of our hope in the possibility of being able to donate his organs because we didn’t know for sure that they’d be big enough and strong enough to use. I told her it’s the one thing keeping us sane and we want to hold onto it for now. She also shared that we might not be able to deliver here in Beaumont if we want to donate organs because births such as this are so rare that the transplant team might not be comfortable handling it. I would actually feel better delivering in Houston where I know things will get done right where he is concerned. Many of the questions we have just cannot be answered. The hard thing about carrying a child with anencephaly is that there are no two stories the same. I have read blog after blog after blog and they all tell a different story. Babies that are still born, babies that go full term and live for minutes, babies that go full term and live for hours, babies that go full term and live for days; how long will we have our baby? Nobody can answer that and that’s so hard for me. I want that timeline set in place so I know I’m using my time with him wisely.
After we left her office I think we felt better but still so broken. Our house had been so quiet for the last couple of days and when we did talk all we did was cry over what was happening. When we weren’t talking all we did was cry over what was running through our heads. No matter where I am that word, anencephaly, haunts me. I was walking through target the other day and I distinctly remember staring at a book case and hearing that word over and over and over in my head. It just won’t leave me alone! I don’t know how many times a day I catch myself in a blank stare and when I come to all I’ve been thinking about is that word; it’s like a scratched cd is running all day in my brain.
We have been very blessed to have dad taking care of all the funeral arrangements; I know it’s the hardest thing he’s ever had to do but he knows how much harder it would be on us. The one thing he can’t do is to pick out a cemetery and that is left up to us. We went by one yesterday and hated it! I don’t think we’re going to be able to find one that we feel is worthy of our baby. I was noticing things I’ve never paid attention to before in a cemetery, how the headstones are lined up, where the tree line is, where the roads run, how symmetrical things are or in this case aren’t; just as I would be so overly picky about where he would be going to daycare and school I think I will be worse about this. This is when I have those moments of “why”. Why must we drive around looking for the perfect place to lay our newborn to rest? Why were we chosen for this? What did we do so wrong to deserve this? Why do so many irresponsible people get to have babies that are healthy just to neglect them when we would do nothing but love him? Why why why why why….this could go on and on. I truly have to remind myself on a minute to minute basis that this is not a punishment. I have to remind myself that there is a picture beyond what I can see and I have to sit and patiently wait for it to be revealed to me. I must appear much stronger in my written words than I really am because people keep telling me what a strong woman I am and I just don’t feel strong at all. The color is washed from my face, the energy is gone from my body, my appetite no longer exists and my desire to wake up in the morning is only there because I have a son on this earth that needs me to wake up and give him all of me. This is not a picture of a strong woman. To me this is a picture of someone that is very lost and broken to the point of complete weakness.
We had three encounters with friends yesterday and a friendly encounter has to be the thing I’ve been dreading the most. Waiting for the look of pity as you approach someone or even worse they turn from you as if you have the plague because they don’t know what to say to you. As we were leaving Dr. Sherman’s office yesterday we passed Aaron’s friend Cory on the sidewalk. I remember seeing him coming and I thought I was going to vomit. I also distinctly remember quietly saying, “there’s Cory” and then lowered my head as if I was hiding and cut my eyes and my body to the right to jet in another direction in an attempt to avoid him. Aaron apparently didn’t sense my severe anxiety over this and called out his name. We both did far better than I think we expected. Tears did well up in our eyes but for the most part we held it together. He was very sympathetic to our situation and willing to talk about it as long as we were willing, it was a refreshing experience for both of us. For me it showed me that I can do it, I can face people again without losing complete control of my emotions. That afternoon as we pulled into the driveway after looking at that cemetery I saw that Jackie was outside and I panicked. I had sent Aaron over there the day before to share with her our news and I just wasn’t ready to face her; that’s why I sent Aaron to tell her! I couldn’t even lift my head up when he stopped the car and I remember saying, “please tell me she isn’t coming over here, please tell me she went back inside” and Aaron said, “Holly, she’s coming over here, she’s here, you have to talk to her sometime”. So I took in a deep breath and exited the car with the best assurance and strength I could work up and she put her hand out, grabbed my arm and pulled me in for a hug; that’s when I lost it. She’s like my neighborhood grandmother and she held me just like a grandma would and let me cry on her shoulder. Once I composed myself I was able to talk to her without sobbing which again confirmed to me that I was able to do it! She assured me that I could come to her anytime I needed to, which I already knew but it does feel good to hear it. We later pulled into my parents’ house after dark and our friend Melissa lives right across the street from them so I had a feeling in my gut that she would see our car and walk over. We were sitting outside watching Aaden play with giant sticks as if they were swords and she came walking up out of the darkness; it took me a few seconds to realize who she was. When she got closer I could tell she had been crying. She just found out and had just read my initial email about the diagnosis and she was clearly agonizing over it. We took her inside so that Aaden wouldn’t see any of us upset and talked to her and answered her questions. I cried a few times but Aaron stayed very strong. She has a son that has almost reached his first birthday and this hits home to a new mommy. Seeing her hurting for us breaks my heart but at the same time gives me comfort because I know people love us. I’m not sure if that’s a selfish way to think or not but it’s how it feels for me. Aaron and I were talking on the way home and I asked him if it was starting to feel as though we were going to be the ones comforting others now and he agreed that it was beginning to feel that way. We have had our time to just sob for no reason and we will have those times again but people on the outside looking in are in another position; we welcome the opportunity to inform and comfort them through it. It’s almost therapeutic.
It felt so good to get Aaden back; he has no idea that we literally need him more than he needs us at this point. We were trying to watch a movie last night and he was doing his typical stuff to get under our skin and Aaron kept saying, “I even missed that buddy”. Who knew we would miss his spitting, hitting and temper tantrums but our house was so dead without it. He has a list of words that are on the “do not say” list such as, shut up, idiot and oh my gosh and he has written himself a little song that goes something like this: we don’t say shut up, we don’t say idiot, we don’t say oh my gosh. He’ll sing it over and over and we know he does that because he wants to say those words but he knows it gets him in trouble; I guess he thinks that singing them in that manner keeps him safe. He would typically be punished for singing it but it was literally music to my ears and honestly made me giggle. I am so thankful for my husband who has been amazing and my sweet baby boy for just being his crazy distracting self.
We just got home from the monster truck show in Houston and we had such a good time. We spent far too much money but what’s the price tag on a little touch of sanity during an insane time of life? We were able to meet Cory and his son there, the only reason we knew about it was because we had run into Cory yesterday and he said he was taking CJ; we somewhat invited ourselves. Our birthday lunch for Aaden was off the charts. We had so much fun with our family and were able to just forget that life is so bad for a few hours. We laughed so hard over some stupid picture app on the iphone but it felt so good to laugh. We have had a few laughs since Wednesday that felt somewhat forced but this laughter came from way down deep and I cherish that time with my family. I know I can’t just stay closed up at home if I ever want to heal. I can’t hide from everyone that loves me so much. So many people have asked if they can come see us or bring us anything and I just keep telling them not yet; I’ve got to stop doing that. I long to see everyone but I dread the initial interaction. I dread so many things at this point and I think I’m just so tired of that feeling. I’m a happy person by nature; I don’t want to be sad. One of the things Dr. Sherman pointed out yesterday was that we need to live and we need to enjoy this pregnancy, as this is the only life we’ll have with our unborn son. As a mother carrying a child that is destined to pass away shortly after he is born, a strong feeling of guilt passes over you when you think of having the nerve to be happy while you know what is in his future. When I start to allow myself to think on happier things my mind starts telling me that I have no right to be happy and I owe it to my child to grieve. I know this isn’t healthy and I want it to change so I can be his happy mommy from now until the day he leaves me to be with Jesus. This is what I’m striving for, to soak up every single kick and wiggle, every back ache, every leg cramp and to enjoy the fact that I have to get up a million times a night to go to the bathroom. I want to embrace my growing stomach like other pregnant women get to do instead of feeling the strong need to conceal it. So many people think I’m so strong but the reality is, I have a long way to go. I sit and write during my moments of strength so maybe that’s why it comes across that way but I’m really just broken and sad. I am determined to find happiness again, I am determined to enjoy what life I have with him before it’s taken from me far too soon, I am determined to allow others to be sad for me without feeling the need to apologize for making them sad and above all I will start working toward being my old self because I miss that me a great deal.